Sylvie Lianna’s Story

Site created on June 5, 2008

Welcome to the site of Sylvie Lianna Isgro-Schicker! Our beautiful girl is living with Krabbe Disease, a rare metabolic disorder effecting the central nervous system. In appreciation of all the wonderful support we have received, we wish to share updates about Sylvie and our family's journey in the face of this devastating illness.

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Sylvie Lianna and her twin sister, Uma Claire were born on January 23, 2006 in Western Massachusetts. The first year of their twin lives was full of wonderful chaos and blissful love. By their first birthday, however, it became apparent that little Miss Sylvie had begun to lose some of the important skills she had recently acquired. Not yet walking or standing, in the first months of 2007 Sylvie lost the ability to sit by herself, hold her bottle, and feed herself. For the rest of the year, as Sylvie's ability to eat and support her own weight continued to ebb, she and her family began a long journey of medical tests, blood draws, surgical procedures, ending with a diagnosis of Krabbe Disease in Jan. 2008. Sylvie's twin sister does not have the disease, but she is a carrier. Krabbe is one of a group of rare genetic disorders called leukodystrophies that affect the central nervous system by disrupting the growth or maintenance of the myelin sheath that insulates nerve cells. Without myelin, nerve impulses are slowed or mis-directed resulting in loss of motor function. There are several different proteins required for proper myelin growth, and a problem with any one of these proteins results in a different leukodystrophy: a deficiency in the protein called galactocerebrosidase results in Krabbe. Today Sylvie is completely unable to roll over, hold objects, or move in any coordinated way. However, she can see, hear, feel and love with her whole being.



Newest Update

Journal entry by Kirsten Isgro

14 years ago--January 23, 2006-- Uma and Sylvie entered the world in Greenfield, MA on a snowy Sunday early morning.  Today in Vermont, it's cold and snowy like a good mid-January should be here in the northeast.  We have two beautiful and smart 13 year old girls in the house now. Happy Birthday wonderful humans!

If you are interested or inclined to make a donation in the Isgro-Schicker twins' name for their birthday: https://krabbeconnect.org/community-engagement/donate/  This is a great organization started up in 2017 by two Krabbe moms and fabulous activist women that envision a foundation that provides "a platform to amplify the voice of patients, aiding researchers and drug developers in accelerating research for better treatments for Krabbe disease."
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